1.1 Introduction
For nearly my entire life, I have been immersed in the lived experience of dementia. A very early memory of this somewhat topsy-turvy perspective comes from summer 1969 in a small town in Nebraska. I had just walked into my childhood bedroom to tell my maternal grandmaâwho was on a visit from Wisconsin and sharing my roomâthat we were almost ready to have breakfast. What I saw surprised (to say the least!) my junior high school self. There she was, standing between my bed and my dresser, fully dressed from head to toe. She thought she was ready to take on the day. One problem: her light blue cotton print housedress was covered by her white silky undergarments. Nothing in her eyes indicated that anything was amiss. What in the world was going on?
Fast-forward 45 years to early spring 2014. I was helping my 90-year-old father calm down enough to drift off to sleep during the final months of his life. How am I supposed to remember that? Here came that haunting question he would ask me multiple times each evening. The problem in his anxious mind centered on how he was supposed to remember that his important objects (eyeglasses, billfold, clock, notebook, and camera) were gathered on his bedside tableâand would still be there when he woke up the next morning.
In the intervening decades, Iâve spent my life as a linguistâto be more specific, as an applied interactional sociolinguistâexploring myriad interconnections between language and health: starting with dementia (as characterized most fully in my nearly five-year longitudinal case study of âElsieâ; see Hamilton 1994), and moving on to head injury, in-hospital interdisciplinary team communication, genetic counseling, online health support group interactions, and physicianâpatient visits. But all along the way, I kept getting called back by dementia, and Iâve made decision after decision to continue to focus my mind and my heart on essential questions that emanate from those living with these cognitive challenges. Iâve been privileged to experience dementia in a wide range of interdisciplinary contexts and to emphasize the importance of keeping in mind what can be done by others in these individualsâ worlds to enhance their lives.
As I completed the final edits on the manuscript that would become Conversations with an Alzheimerâs Patient (Hamilton 1994), many questions remained. I knew I had just taken the first steps in what would likely be a lifelong journey. Living in Berlin in the late 1980s when I was writing my doctoral dissertation, I found great comfort in Rainer Maria Rilkeâs (1929) words to young poet Franz Xaver Kappus in July 1903 when Kappus wasnât all that much younger than I was at the time:
Trying to love the questions. Trying to live the questions. And trying to have patience to allow lifeâs experiences to coax one gradually without notice to a place and time when the answers to those lifelong questions would almost seamlessly appear. Although I canât say that I have reached the point where all my earlier questions are answered (what a boringâalthough perhaps satisfyingâplace that would be!), I have reached the point where Iâd like to take another stab at it.Be patient toward all that is unsolved in your heart and try to love the questions themselves. ⊠Do not now seek the answers, which cannot be given you because you would not be able to live them. And the point is, to live everything. Live the questions now. Perhaps you will then gradually, without noticing it, live along some distant day into the answer1 (emphasis added).
As I sit down to write this book, my heart is full when I realize the extent to which my own individual existence, expertise, and experiences have been exponentially expanded by being enveloped in other worlds that have been animated by individuals with dementia. I am awash in their voices. These snippets of talk rush into my mind and make me alert to the humanity of this projectâto the many ways in which dementia interfaces with the world as lived by persons who are as different from each other as they are from us (the currently healthy ones who meet at workshops and conferences, in classrooms, and even who write books like this one).
This book is filled with glimpses of these lives as they interact with people who care for themâboth personally and professionally: adult children, spouses, volunteers, activity directors, support group facilitators, social workers, nursing staff, physicians, even specially trained art gallery guides. Many kinds of knowingâas well as gaps in this knowledgeâare on display in these interactions, along with the face threats that so often accompany these gaps and that spark the balancing acts that center life with dementia.
1.2 My Approach
How frustrating it is not to remember. What is the password for my online bank account ? Where did I park my car at the airport? When did my nephew graduate from college? Such memory lapses occur on a fairly regular basis to most of us. But imagine a world in which your physician asks how old you are and you need to turn to your spouse for the answer. Or where your friend mentions how much she enjoyed going out to lunch with you and you have only the vaguest recollection of that event. Or where you forget how to get dressed for the day and arenât even aware that youâve forgotten. Or where you begin to settle in for the night and are struck by a stabbing pang of anxietyâHow will I be able to remember where my eyeglasses are tomorrow morningâeven though they are on the bedside table right next to you as they are every night. An exploration of these and myriad other examples of challenges related to knowing in dementia are at the heart of this book.
Many people may recognize changes like these. Changes that may be part of a diagnosis of dementia of the Alzheimer type. Changes that can be discovered and labeled through cognitive testing in a physicianâs office. Changes in actions and communication that indicate underlying changes in the brain. Many outstanding publications representative of the more pervasive medical model of dementia (Bayles and Tomoeda 2014; Husain and Schott 2016; Ravdin and Katzen 2013) exist to help interested readers understand the links between changes in an affected individualâs brain and developing symptoms of those changes.
This book is different. My aims are different. I have spent my life thinking about and exploring how cognitive challenges in connection with changes related to dementia are displayed and negotiated through language use in social interaction with an eye toward meaning making. How linguistic aspects of social interaction are shaped byâand shapeâthe individual with dementia and those who care personally and/or professionally for him or her. In that effort, over the course of my career, I have carried out separate qualitative interactional sociolinguistic studies on language used in a variety of meaningful interactions involving individuals with dementia, including everyday conversations with friends and family, physicianâpatientâadult companion visits, memory loss support group meetings, and specially designed art gallery tours.
In this book, I examine the ways in which participant frameworks, physical environments, activity types, and interactional goals shape how cognitive challenges and strengths are navigated as âour mental states make contact with the worldâ (Hughes 2011: 265)âand, crucially, how these aspects of context impact the self-esteem of individuals with dementia and their conversational partners. To this end, I analyze the language used in the aforementioned settings through the lens of epistemic discourse analysis, the âsystematic and explicit study of the ways knowledge is interactively âmanagedâ (activated, expressed, presupposed, implied, conveyed, construed, etc.) in the structures and strategies of text and talkâ (van Dijk 2013: 497) in combination with Goffmanâs (1967, 1971) and Brown and Levinsonâs (1987) insights into face maintenance in everyday social interaction. I explore how individualsâ changes in cognition may impact faces of these individuals, leading some to feel ashamed, anxious, or angry (threats to positive face in Brown and Levinsonâs model), others to feel patr...